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Posted 11/10/2014 5:32 PM (GMT 0)

NiceCupOfTea said...

David1991 said...
Looking up the other biologics....it seems like most only have a 40-50% success rate? That's not nearly as high as I thought. So what do people do if they're in the other 50-60%, just keep trying different drugs hoping for eventual success I guess?

I know these are a bunch of noob questions. I'd usually be all about researching everything I could get my hands on but I'm very drained lately and keeping up with dental school, a part time job, a serious relationship and all of this has been a hefty task. I appreciate everyone's help.

Well I failed two biologics, Remicade and Humira. I wasn't even like most people, who get a few months or years' benefit out of them before they stop working. I got zero benefit - was hospitalised with my worst ever flare up a month after starting Remicade and it didn't get any better after that.

If meds fail, then surgery is usually the next option. Which is what happened with me. It will usually be a bowel resection but if you have pancolitis (Crohn's of the entire colon) you may wind up with an ileostomy - again which is what happened with me.

So none of the drugs worked for you at all?

What happens with an ileostomy, the entire colon is removed and you now have that bag attached? How is life now with that? What if Crohn's spreads to other areas of the GI tract like the small intestine or even other areas?

Did the doctors mention how this would affect your lifespan?
Posted 11/14/2014 2:45 PM (GMT 0)
Man, thought things were getting better with the budesonide. But in the last 10 hours I've gone to the bathroom 8x, 4-5 of which were in the middle of the night interrupting my sleep.

The previous 4 days had been much better but then all of a sudden back to the worst its been. Constantly cramping following by the need to go to the bathroom but then it only ends up being a little bit, but if I try to hold it I cramp up again pretty badly.

Pretty much rug burned on my butt now too lol and I can just tell hemorrhoids are going to come back soon.

I took hydrocortisone again today, maybe that will help again but I certainly don't want to be on that for any extended period of time.

Hopkins appointment next Thursday
Posted 11/15/2014 5:05 AM (GMT 0)
I have been on 9mg entocort for over a year now and have had a hard time going down and its not considered a drug that you take long term (although i have read that people take it for years.) Thus, my MD put me on humira, to try to wean of entocort...still working on that. I feel like doctors go with the, if its not hurting him, than lets do what works and taking 9mg has worked for me and when i try to go down to 3 and than none, my symptoms have come back, even while im on humira. Anyway, thats a different story.

As with any steroid, the longer you take it, you more your body becomes dependent on it and going down is very hard, That said, as i told you before, entocort work mostly in your gut, unlike pred, which effects the entire body. You should have a lot fewer side effects from entocort. Bottom line is and most people are trying to tell you, there is simply way more upside to take the meds, than downside.

I will also go on a slight rant here, on all these people i read on this forum that talk about oils and magical remedies. Dont listen to them. Period. The newly diagnosed people see this and try it and than cause more damage than they can imagine. Yes, some people are allergic to certain foods, like im lactose intolerant, so i dont drink milk. When you are going five times a day, you should avoid raw foods. Thats just common sense, but no certain diet, has been proven to be effective in curing crohn's disease or causing it for that matter. End of story. Dont be hard on yourself when you have a flare and think its because you ate that certain something two weeks ago. Its not true. Crohn's is an autoimmune disease, not an i ate a nut and three weeks later im sick disease.

More on crohn's and diet can be found below. Has all the info you ever wanted to know.

http://www.ccfa.org/resources/diet-and-nutrition.html
Posted 11/15/2014 12:34 PM (GMT 0)
BeeSting no longer posts here but she was one who for the most part avoided meds.

www.healingwell.com/community/default.aspx?f=17&m=2429828

www.healingwell.com/community/default.aspx?f=38&m=1666318
Posted 11/15/2014 2:27 PM (GMT 0)
IamCurious, thanks...I'll check out those threads


Adam1980 said...
I have been on 9mg entocort for over a year now and have had a hard time going down and its not considered a drug that you take long term (although i have read that people take it for years.) Thus, my MD put me on humira, to try to wean of entocort...still working on that. I feel like doctors go with the, if its not hurting him, than lets do what works and taking 9mg has worked for me and when i try to go down to 3 and than none, my symptoms have come back, even while im on humira. Anyway, thats a different story.

As with any steroid, the longer you take it, you more your body becomes dependent on it and going down is very hard, That said, as i told you before, entocort work mostly in your gut, unlike pred, which effects the entire body. You should have a lot fewer side effects from entocort. Bottom line is and most people are trying to tell you, there is simply way more upside to take the meds, than downside.

I will also go on a slight rant here, on all these people i read on this forum that talk about oils and magical remedies. Dont listen to them. Period. The newly diagnosed people see this and try it and than cause more damage than they can imagine. Yes, some people are allergic to certain foods, like im lactose intolerant, so i dont drink milk. When you are going five times a day, you should avoid raw foods. Thats just common sense, but no certain diet, has been proven to be effective in curing crohn's disease or causing it for that matter. End of story. Dont be hard on yourself when you have a flare and think its because you ate that certain something two weeks ago. Its not true. Crohn's is an autoimmune disease, not an i ate a nut and three weeks later im sick disease.

More on crohn's and diet can be found below. Has all the info you ever wanted to know.

http://www.ccfa.org/resources/diet-and-nutrition.html

I agree, I think there are certainly foods that do more damage than others but I'm certainly not expecting a miracle cure from my diet.

At this point I'm sticking to mostly white bread, white pasta, white rice, chicken, eggs, avocado, some cheese, peanut butter, almost milk etc.....Haven't had vegetables in over a week :( which itself obviously isnt healthy but better than getting the negative effects of them while in a flare. Been having the occasional piece of peeled fruit.

I appreciate your input....so have you seen ANY improvement from the humira or does it seem like the entocort is doing all of the work? Last night was much better than the previous night but that's probably because I took 30mg hydrocortisone yesterday (on top of the 9mg entocort) and also 4 pills of immodium. I still woke up having significant D but I wasn't up 5x in the middle of the night to relieve myself like the previous night. I will probably keep taking the immodium for now but don't want to keep taking the hydrocortisone unless it gets intolerable.

When you are on 9mg of entocort do you feel completely normal again, or just not terrible? For years even after my worst flare I felt almost completely normal while taking Asacol HD + Rowasa...but now I'm fearing I'll never be back to that norm again.
Posted 11/16/2014 12:27 AM (GMT 0)
Well, that was why I was left on predisone this long if it is not broke don't fix it..Can't handle any Sulfa drugs and yes biologics is the next step..If the new GI I am going to see follows along with things in my past..I do think alternatives and diet can help and keep things under control in milder CD..I think mine might be going to the moderate level again so I am just screwed for now waking up to diarrhea with blood after constipation and throwing up neon yellow bile..The new GI may go another direction no telling..I have moved around alot since I joined the board we have moved 6 times. I almost took a job in Arizona last January but ended up staying in the Oklahoma City area but only have seen my regular doctor in the last two years. I can see your diet except but have done gluten free for awhile..
Posted 11/16/2014 3:21 PM (GMT 0)
Although there are some folks who in an effort to help, tell you that diet has no impact, I believe there is more to the story.
I agree there is not enough significant research. That looking only at the research requires a leap of faith. However, I believe that what we put in our bodies has to have an effect on our health (no proof, just seems likely to me). And more specifically, what we put in our guts has to have some effect on our guts. This seems like common sense to me.
There is actually quite a bit of small sample research out there relating to the Specific Carbohydrate Diet mostly from what I have seen groups of 10 or 15. I know that any scientist will tell you that this sample size is too small. However, from all the studies the results have been similar, everyone experiences some improvement, and the majority are in remission. The following is one example.
http://www.scdresearch.com/current-research.html
So I decided, that the drugs and expectation of surgery was worth a try. I went on SCD and I went from many ulcers in the small bowel to none. Been that way for a few years now.
So, not saying that there is 100% valid science, not saying works for everyone, am saying it seems like common sense food would have some impact and that all the small studies have the same conclusion, it works for most.
Hope I said the above in a way that is helpful and not frustrating to anyone
Healing thoughts
Dave
Posted 11/16/2014 4:04 PM (GMT 0)

dfdavedf said...
Although there are some folks who in an effort to help, tell you that diet has no impact, I believe there is more to the story.
I agree there is not enough significant research. That looking only at the research requires a leap of faith. However, I believe that what we put in our bodies has to have an effect on our health (no proof, just seems likely to me). And more specifically, what we put in our guts has to have some effect on our guts. This seems like common sense to me.
There is actually quite a bit of small sample research out there relating to the Specific Carbohydrate Diet mostly from what I have seen groups of 10 or 15. I know that any scientist will tell you that this sample size is too small. However, from all the studies the results have been similar, everyone experiences some improvement, and the majority are in remission. The following is one example.
http://www.scdresearch.com/current-research.html
So I decided, that the drugs and expectation of surgery was worth a try. I went on SCD and I went from many ulcers in the small bowel to none. Been that way for a few years now.
So, not saying that there is 100% valid science, not saying works for everyone, am saying it seems like common sense food would have some impact and that all the small studies have the same conclusion, it works for most.
Hope I said the above in a way that is helpful and not frustrating to anyone
Healing thoughts
Dave

Hey Dave,

I agree with both sides. I work in the medical field and I'm naturally inclined towards the science aspect of things, having valid research, etc...BUT I am also very into diet/nutrition/fitness and I do believe certain foods can have a big impact on ones health.

I have tried many of the natural remedies without much success. And when I am in remission I seem to be able to eat huge amounts of any type of food and be fine. But when flaring I think some do cause more issues than others.

I will have to look more into the SCD. I have a lot of links open to read, just been incredibly busy with school and clinic hours but I'll get to them. For now I have been sticking with mostly the typical non-troublesome foods and seeing what I can tolerate.

That's great about your success with bringing the ulcers to zero...this was tested in a colonoscopy or what? I want to make sure that I don't just go by "feel" but also the true effect on my GI tract. I am still getting blood every now and then.
Posted 11/16/2014 4:39 PM (GMT 0)
Hi David
My diagnosis went as follows. I had virtually every test know to man. The results were very inconsistent. One test talked about the results as if Crohn's was already diagnosed and pointed out I was in a flare, the next test result was I need to stop taking so many aspirin (NAIDS?) (I was not taking any). Finally I had a pill cam and even I could see the ulcers throughout the small bowel. The doc said I had a moderate case but that I had better than a 75% chance of surgery and prescribed pred and pentassa. She then told me I would be on strong drugs for the rest of my life.
I started SCD before I started the meds but always took the meds prescribed.
3 years later, I had a pill cam and colonoscopy and the doc said my guts were literally 100%. Zero indication of Crohn's. I still take a low dose of pentasa and LDN as insurance.
One more comment. The book Breaking the Vicious Cycle, which outlines the SCD makes it very clear that to be successful you have to fanatically compliant. This diet is not about doing it till you feel better then eating what you want. This diet is about being committed 365 days of the year with every bite of food. In fact the book says that if you canot be fanatically compliant, then you should wait until you can be. Starting and stopping or cheating is probably worse for you than not starting at all.
Some folks are not as strict if they have gone 2 years with zero symptoms. I also have slow bowel motility, which I think caused the SIBO, and diverticulitis (or what ever it is called when you have pockets but no symptoms) and IBS. So I remain fanatically compliant. I still have days where I feel poorly but they are very much the exception and the pill cam and colonoscopy do not lie. I have clear guts.
If I can support you in any way let me know
Healing thoughts
Dave
Posted 11/16/2014 7:50 PM (GMT 0)

dfdavedf said...
Hi David
My diagnosis went as follows. I had virtually every test know to man. The results were very inconsistent. One test talked about the results as if Crohn's was already diagnosed and pointed out I was in a flare, the next test result was I need to stop taking so many aspirin (NAIDS?) (I was not taking any). Finally I had a pill cam and even I could see the ulcers throughout the small bowel. The doc said I had a moderate case but that I had better than a 75% chance of surgery and prescribed pred and pentassa. She then told me I would be on strong drugs for the rest of my life.
I started SCD before I started the meds but always took the meds prescribed.
3 years later, I had a pill cam and colonoscopy and the doc said my guts were literally 100%. Zero indication of Crohn's. I still take a low dose of pentasa and LDN as insurance.
One more comment. The book Breaking the Vicious Cycle, which outlines the SCD makes it very clear that to be successful you have to fanatically compliant. This diet is not about doing it till you feel better then eating what you want. This diet is about being committed 365 days of the year with every bite of food. In fact the book says that if you canot be fanatically compliant, then you should wait until you can be. Starting and stopping or cheating is probably worse for you than not starting at all.
Some folks are not as strict if they have gone 2 years with zero symptoms. I also have slow bowel motility, which I think caused the SIBO, and diverticulitis (or what ever it is called when you have pockets but no symptoms) and IBS. So I remain fanatically compliant. I still have days where I feel poorly but they are very much the exception and the pill cam and colonoscopy do not lie. I have clear guts.
If I can support you in any way let me know
Healing thoughts
Dave

So to be clear, after you were diagnosed you DID take pentasa and prednisone along with switching to the SCD. But now to remain in remission you've been on just the low dose pentasa and LDN along with the SCD? Have you ever tried coming off all meds altogether? When and why did you start the LDN if things were already working with pentasa and SCD?

I am already very strict with my diet due to the bodybuilding, but yes SCD is much more restricted than even my typical restrictive diet. It would be unfortunate to NEVER be able to eat most of the foods I love again, but IF that would keep me from needing to use the biologics and whatnot I think that would be a worthwhile trade-off.

My appointment at Hopkins is on Thursday. I'll bring up all of this but I have a feeling they'll shy away from the dietary options.
Posted 11/17/2014 7:40 AM (GMT 0)
I was also diagnosed with Chron's and went through 10 months medication and nothing happened. I was advised to undergone a surgery and I had my colon and appendix removed. I have a permanent bag attached to my body now and the surgery really changed my life.
Posted 11/17/2014 2:30 PM (GMT 0)
HI David
"So to be clear, after you were diagnosed you DID take pentasa and prednisone along with switching to the SCD. "
Yes, I said to myself if I cannot trust the doc then I need to find a new one. I always take the meds the GI prescribes. The pred caused peripheral neuropathy (I got drop foot, also scared the heck out of me). Went on a very fast taper, like 2 days and then went to Enticort. I also had SIBO so did two rounds of Rifaximin, and did a Low FodMap version of SCD.

"But now to remain in remission you've been on just the low dose pentasa and LDN along with the SCD?

In no way do I believe the medication has anything to do with my healing. I believe the healing is 100 or at least 99% attributable to the diet. But , yes, this is what I am taking.

"Have you ever tried coming off all meds altogether?"

This board used to have some folks who used to express their experience and concern for others by pleading that folks do not drop all meds. They told their stories about stopping all meds and having to go to the hospital for emergency surgery. This impacted me. Also, the low dose pentasa and the LDN have virtually no known side effects, so this is a super safe combination. I have no great desire to come off the meds. I believe they contribute to the safety net and do no harm. I think I could be on this forever and have no negative impact.

"When and why did you start the LDN if things were already working with pentasa and SCD?"

My journey has not been a straight line. I have had my ups and downs. This is typical of SCD. Most folks who do SCD will tell you it is 2 steps forward and 1 back. Sometimes 2 steps forward and 6 back. This describes my experience. At about 2 years I was not having symptoms as bad as the beginning but my guts were not great. I did the full round of testing and was diagnosed with SIBO. I struggled to get rid of it. Over the years I have been diagnosed with SIBO, slow bowel, IBS, Crohn's and diverticulitis. This makes my case complicated. I started on the LDN after reading a lot about the research regarding Crohn's and the risk profile during one of those times where I was not feeling perfect. Also, many folks go with a combination of SCD and LDN. I said why not. It will not hurt and it might help.
In my case there are two definitions of "working". One is damage being done to my guts. As I said the last colonoscopy and pill cam, the doc said there was zero indication of disease. The evidence I have says the program I am doing is "working" perfectly
The second definition of "working" is, does your gut feel perfect. And the answer to this is mostly but not always. I have to be careful (even within the restrictions of SCD) of what I eat. There are times where I feel generally poorly. I put that on the IBS/slow bowel motility but no one really knows. I am trying to get to perfectly feeling guts all the time, but am not there yet.

"I am already very strict with my diet due to the bodybuilding, but yes SCD is much more restricted than even my typical restrictive diet. It would be unfortunate to NEVER be able to eat most of the foods I love again, but IF that would keep me from needing to use the biologics and whatnot I think that would be a worthwhile trade-off. "
It seems like a big deal at first, but you grow used to it. You think your diet now is "normal" but I am sure compared to the Standard American Diet (SAD) it is very different. You are used to it. It makes sense and I am sure tastes good to you. That is like SCD. It becomes your normal and really no big deal. Although I for sure miss beer. Like you, to avoid the big drugs and surgery, if there is an option I would do just about anything.
BTW - If you came to my house to eat, and you are welcome, I bet you would love my flavors. Last night I had an awesome salad. I buy this amazing vinegar from Canada. Blackened Mahi Mahi. Squash puff. Pumpkin Cake with frosting and frozen yogurt. Virtually anything you like now, including spaghetti, cake, pancakes, ice-cream, mustard, ... you can have on SCD. It takes effort, but it tastes great.

"My appointment at Hopkins is on Thursday. I'll bring up all of this but I have a feeling they'll shy away from the dietary options."
Doctors are trained to treat this with drugs. Most have never even heard of SCD. I believe it is 100% my responsibility to take care of my body. Doctors unfortunately do not know it all. So I see Docs as one more source of information. They know about some drugs (The last GI I went to had never heard of LDN) more than me. I do not expect them to know about healing other than drugs. So their opinion on my diet is irrelevant to me. By every standard my diet is super healthy. Please do not expect a GI to support natural healing. My experience tells me they will not and might even oppose.
On this site there are a few SCD folks, but on SCD Yahoo, there are thousands. On the SCD yahoo site you can get answers to any question you can imagine and you will be supported 100% on your healing journey.
Some folks see this as a tough decision but it was super easy for me when I thought about the options
My Crohn's was negatively impacting my ability to be a husband, father and employer. I had to 100% everything in my power to stop this. I do not know about others but I was feeling guilty lying in bed when my kids needed me. I had to do everything and anything, so that if it failed, and I was still sick in bed, I could say to myself I did everything I could do. In my case it did not fail
Dave

Post Edited (dfdavedf) : 11/17/2014 8:12:18 AM (GMT-7)

Posted 11/17/2014 11:33 PM (GMT 0)

Shanon Murphy said...
I was also diagnosed with Chron's and went through 10 months medication and nothing happened. I was advised to undergone a surgery and I had my colon and appendix removed. I have a permanent bag attached to my body now and the surgery really changed my life.

How old are you? Do you still have any remaining Crohns symptoms? What is life like now living with the bag?
Posted 11/17/2014 11:36 PM (GMT 0)

dfdavedf said...
HI David

Yes, I said to myself if I cannot trust the doc then I need to find a new one. I always take the meds the GI prescribes. The pred caused peripheral neuropathy (I got drop foot, also scared the heck out of me). Went on a very fast taper, like 2 days and then went to Enticort. I also had SIBO so did two rounds of Rifaximin, and did a Low FodMap version of SCD.



In no way do I believe the medication has anything to do with my healing. I believe the healing is 100 or at least 99% attributable to the diet. But , yes, this is what I am taking.



This board used to have some folks who used to express their experience and concern for others by pleading that folks do not drop all meds. They told their stories about stopping all meds and having to go to the hospital for emergency surgery. This impacted me. Also, the low dose pentasa and the LDN have virtually no known side effects, so this is a super safe combination. I have no great desire to come off the meds. I believe they contribute to the safety net and do no harm. I think I could be on this forever and have no negative impact.



My journey has not been a straight line. I have had my ups and downs. This is typical of SCD. Most folks who do SCD will tell you it is 2 steps forward and 1 back. Sometimes 2 steps forward and 6 back. This describes my experience. At about 2 years I was not having symptoms as bad as the beginning but my guts were not great. I did the full round of testing and was diagnosed with SIBO. I struggled to get rid of it. Over the years I have been diagnosed with SIBO, slow bowel, IBS, Crohn's and diverticulitis. This makes my case complicated. I started on the LDN after reading a lot about the research regarding Crohn's and the risk profile during one of those times where I was not feeling perfect. Also, many folks go with a combination of SCD and LDN. I said why not. It will not hurt and it might help.
In my case there are two definitions of "working". One is damage being done to my guts. As I said the last colonoscopy and pill cam, the doc said there was zero indication of disease. The evidence I have says the program I am doing is "working" perfectly
The second definition of "working" is, does your gut feel perfect. And the answer to this is mostly but not always. I have to be careful (even within the restrictions of SCD) of what I eat. There are times where I feel generally poorly. I put that on the IBS/slow bowel motility but no one really knows. I am trying to get to perfectly feeling guts all the time, but am not there yet.


It seems like a big deal at first, but you grow used to it. You think your diet now is "normal" but I am sure compared to the Standard American Diet (SAD) it is very different. You are used to it. It makes sense and I am sure tastes good to you. That is like SCD. It becomes your normal and really no big deal. Although I for sure miss beer. Like you, to avoid the big drugs and surgery, if there is an option I would do just about anything.
BTW - If you came to my house to eat, and you are welcome, I bet you would love my flavors. Last night I had an awesome salad. I buy this amazing vinegar from Canada. Blackened Mahi Mahi. Squash puff. Pumpkin Cake with frosting and frozen yogurt. Virtually anything you like now, including spaghetti, cake, pancakes, ice-cream, mustard, ... you can have on SCD. It takes effort, but it tastes great.


Doctors are trained to treat this with drugs. Most have never even heard of SCD. I believe it is 100% my responsibility to take care of my body. Doctors unfortunately do not know it all. So I see Docs as one more source of information. They know about some drugs (The last GI I went to had never heard of LDN) more than me. I do not expect them to know about healing other than drugs. So their opinion on my diet is irrelevant to me. By every standard my diet is super healthy. Please do not expect a GI to support natural healing. My experience tells me they will not and might even oppose.
On this site there are a few SCD folks, but on SCD Yahoo, there are thousands. On the SCD yahoo site you can get answers to any question you can imagine and you will be supported 100% on your healing journey.
Some folks see this as a tough decision but it was super easy for me when I thought about the options
My Crohn's was negatively impacting my ability to be a husband, father and employer. I had to 100% everything in my power to stop this. I do not know about others but I was feeling guilty lying in bed when my kids needed me. I had to do everything and anything, so that if it failed, and I was still sick in bed, I could say to myself I did everything I could do. In my case it did not fail
Dave


So you basically do low FODMAP and SCD, going off of your other comment, what do you typically eat? because according to this list http://www.breakingtheviciouscycle.info/legal/listing/ pasta, ice cream, pretty much all complex carbs are not allowed on the diet so how are you eating those? I'd take you up on the offer for dinner if you happened to be near Baltimore :D haha

I was also confused by the theory behind the SCD. At first I thought it was looking for low residue foods and whatnot like FODMAP but then that list said things like broccoli and other typically troublesome foods were fine, so I really don't know what it's basing it on. I mean it even said alcohol was OK :\

It does seem like you have a lot going on which could complicate the situation. You might have mentioned it but how old are you?

I agree most doctors will shy away from any alternative treatments. Working in the medical field I understand this, most are just taught the standard protocols. I will say though that up to this point I have not had success with the natural methods, though I am open to trying things.

The last few days have felt almost completely normal which I am incredibly grateful for. I imagine this is due to the entocort as nothing else has changed. I've even fit in some fruit, vegetables and dairy in small amounts without a real issue. Again though I want a long term solution, and entocort does not fall under that category.
Posted 11/18/2014 12:11 AM (GMT 0)
For me, changing diet, especially SCD required more than this thread. I suggest you read the book, Breaking the Vicious Cycle. I read it 3 times (it is a very short read) then I did the diet.
If you want a shorter intro, prior to reading the book search for SDC wicki.
Prior to committing to SCD, I read GAPS, Makers, Low Res, Low FodMap, The Probiotic Revolution and a bunch more books and studies. I think you are very serious about seeking alternatives and I think you need more info than this thread can provide. Each of these books tells you they have the answer. (and for some I am sure they do). SCD "spoke" to me, so I committed 100%.
I am 55. The basis of SCD is to eat only simple carbs, not bi and poly saccharides. This starves the bad bacteria and makes your guts back in balance. Each person then does a version that works for them. My self I eat only fully cooked or soft veg. I eat low carb. No fried foods. Very limited nuts,..., and a bunch of other stuff.
The process is an intro diet, then the slow introduction of foods so you can really see what works for you as an individual. I wish there was a very simple straight forward answer, but even on SCD there is much to learn and figure out.
Healing thoughts and I hope you find a path that works for you
Dave
Posted 11/18/2014 1:13 PM (GMT 0)

dfdavedf said...
For me, changing diet, especially SCD required more than this thread. I suggest you read the book, Breaking the Vicious Cycle. I read it 3 times (it is a very short read) then I did the diet.
If you want a shorter intro, prior to reading the book search for SDC wicki.
Prior to committing to SCD, I read GAPS, Makers, Low Res, Low FodMap, The Probiotic Revolution and a bunch more books and studies. I think you are very serious about seeking alternatives and I think you need more info than this thread can provide. Each of these books tells you they have the answer. (and for some I am sure they do). SCD "spoke" to me, so I committed 100%.
I am 55. The basis of SCD is to eat only simple carbs, not bi and poly saccharides. This starves the bad bacteria and makes your guts back in balance. Each person then does a version that works for them. My self I eat only fully cooked or soft veg. I eat low carb. No fried foods. Very limited nuts,..., and a bunch of other stuff.
The process is an intro diet, then the slow introduction of foods so you can really see what works for you as an individual. I wish there was a very simple straight forward answer, but even on SCD there is much to learn and figure out.
Healing thoughts and I hope you find a path that works for you
Dave


So pasta wouldn't be allowed at first right? I mean it is certainly not a simple carb. Nor is the flour used in cake unless you're making it with a non-traditional recipe.

In any case, I certainly do have much more reading to do on both the medical and alternative treatment options. Thankfully for the time being the entocort is keeping the flare at bay so I at least have a little time to figure things out without going nuts lol. It's still not great but it is a lot better than it was.
Posted 11/19/2014 6:01 AM (GMT 0)

David1991 said...

Shanon Murphy said...
I was also diagnosed with Chron's and went through 10 months medication and nothing happened. I was advised to undergone a surgery and I had my colon and appendix removed. I have a permanent bag attached to my body now and the surgery really changed my life.

How old are you? Do you still have any remaining Crohns symptoms? What is life like now living with the bag?

Hello David. I'm a 50 y/old ostomate. I already left Chrons way behind me and no more symptoms. The ostomy bag is already part of my everyday life and I have learned to live it. I have a great quality life now and I'm happy telling people about my condition. It gave me an opportunity to meet good, wonderful & love-filled people everyday.
Posted 11/19/2014 12:53 PM (GMT 0)

Shanon Murphy said...

David1991 said...

Shanon Murphy said...
I was also diagnosed with Chron's and went through 10 months medication and nothing happened. I was advised to undergone a surgery and I had my colon and appendix removed. I have a permanent bag attached to my body now and the surgery really changed my life.

How old are you? Do you still have any remaining Crohns symptoms? What is life like now living with the bag?

Hello David. I'm a 50 y/old ostomate. I already left Chrons way behind me and no more symptoms. The ostomy bag is already part of my everyday life and I have learned to live it. I have a great quality life now and I'm happy telling people about my condition. It gave me an opportunity to meet good, wonderful & love-filled people everyday.

That's great Shannon, congratulations :)

How long ago did you have the surgery? Did the doctors say any recurrence of crohn's symptoms were possible? My understanding was that it was impossible to completely get rid of the crohns and that even if some troublesome area was removed other places could still be attacked/damaged by your immune system.

Thanks
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